I AM HAVING j-pouch surgery...before my wife gives birth in january

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ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 8/4/2009 2:51 PM (GMT -6)   
So i have just been observing on this site for a few weeks, very helpful! i am currently taking 20mg pred, six lialda per day and one 6-mp...
Seems like i miss every monday or tuesday of work cause it is so hard to get started again.. i start going to the restroom every morning at about 4am and dont stop till i leave for work. I asked my dr to get back on remicade, so we are going to try it next week. also i told my dr i am finally considering the j-pouch surgery because i have been reading posts of these 60 and 70 year old people with UC for 30 years, and i was thinking how i would hate to deal with this pain, urgency, and frequent trips to restroom for my whole life, i am 24 now...
i asked the nurse if she thinks we could do the surgery this year and she said yes, my only concern is, my wife is 3.5 months pregnant, she is due jan 25, 2010...i would hate to be recovering or in the hospital when she is going into labor..
but then again, i think it might be harder on us if i have the surgery next year, with a newborn in the house. or should i have the surgery at all?? i know its my decision but i feel sometimes that my UC isnt bad enough, but then again just having the worry of a flare up while being a dad and the breadwinner is bad enough.. any words? ideas? you guys are great! thanks in advance...
 
turn  


24 year old guy, UC since I was 17
remicade for two years, worked great but got married and was told it could cause birth defects so I quit feb 08.
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 20 mg pred
 
starting back on remicade to see if i can get some relief next week,
considering j-pouch surgery this year

Post Edited (ruissarr) : 8/7/2009 7:41:23 AM (GMT-6)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/4/2009 3:03 PM (GMT -6)   
Chances are since you are on prednisone that you will have to have the surgery in 2 steps which means you will have a temp ostomy for anywhere from 6-8 weeks. If I were in your shoes I'd have the surgery within the next couple of months. You will be UC-free and healthy in time for the arrival of your new child. You can then schedule your second surgery at your convenience. I can't imagine anything sweeter than being healthy and holding a newborn!

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 8/4/2009 3:16 PM (GMT -6)   
so you mean go ahead with step one now, and then have step two after january, after the baby is born? sounds like a plan... i have an appt with my gi next monday, he will get me a refferal to the surgeon after that...
the thought of surgery is so scary to me, the more i think about it, the more i want to put it off till next year, but i know i will be just as scared next year..
also the fact that i have 3 weeks of unpaid leave before short term disability kicks in at work...
 
oh one more thing, the second surgery, is it as extensive as the first? is the recovery time faster? i would imagine it would take awhile to get used to "the natural way" again, how long do you think i would stay home from work after the second surg?
24 year old male, uc since I was 17
remicade for two years, worked great but got married and was told it could cause birth defects so I quit feb 08.
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 10 mg pred
 
starting back on remicade to see if i can get some relief next week, considering j-pouch surgery this year, any tips would be great!

Post Edited (ruissarr) : 8/4/2009 2:29:55 PM (GMT-6)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/4/2009 3:50 PM (GMT -6)   
Yes, have surgery now and proceed with the second step after the baby is born. The thought of this surgery is scary to everyone, myself included! But if you are really that sick you will be a much better husband and father if you are healthy. The second surgery is not as difficult as the first but adaption to food can take time, but that's not time spent sitting at home.

I was out of work 3 weeks for each surgery. Typically one is out 6 weeks for the first surgery and 3 weeks for the second but I have a desk job so it was easy to come back after 3 weeks.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 8/4/2009 3:55 PM (GMT -6)   
well thanks for the info! i also have a desk job, so that is encouraging.... im pretty much active, i sometimes feel my UC is not serious enough for surgery, i have been seriously hospitalized a couple times when i was 18 and 19, but for the most part now i just have cramping, urgency and use the restroom about 10-15 times per day..
24 year old male, uc since I was 17
remicade for two years, worked great but got married and was told it could cause birth defects so I quit feb 08.
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 10 mg pred
 
starting back on remicade to see if i can get some relief next week, considering j-pouch surgery this year, any tips would be great!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/4/2009 4:42 PM (GMT -6)   
suebear has a great idea! You can get the hard part of the surgery over, and be healthy for your baby.
I was sick when my baby was born, and it was horrible trying to take care of my son while i was in the batrhoom all the time, my poor baby was in teh bathroom all the time with me. And i was way to tired to play with him, and i was afraid to take him places cause i might have one of the spells where i would just go for hours on end.
So when he was almost 2 i had surgery for a perm ileo and i am a much better mother now!

Good luck!

JLG45
Regular Member


Date Joined Feb 2009
Total Posts : 114
   Posted 8/4/2009 5:20 PM (GMT -6)   
I'm meeting with my GI and in the same boat as you.

My wife gave birth to our first son ( pregnant prior to remi & Pred ). Now that I'm almost off the pred ( 60 - 2.5mg ), I'm seriously considering having surgery. At my last visit the GI said he wanted to get me on a combo of 6mp and Remicade once the flare stopped and personally, Reading about 6mp the side effects are dangerous (especially if you want to conceive ), and mixing Remicade could be even worse. I'm thinking why compromise my health when I can have the colon removed and be done with it. The long term side effects of the drug seem worse than a j-pouch and given I have pancolitis it's not going to get better.

During the last few days I've had early signals of a flare ( the odd small canker ), and wee bit of clear discharge from my butt when passing gas(could just be from the ASA suppository?? ). Anyway, I've been on Remicade since Feb and seldomly form a normal stool. Most of the time it's malformed and if I've been drinking beer it's the runs the next day. Tomorrow I'll speak to the GI and see what happens. When I was in the hospital back in Feb/Mar they advised I'd likely need surgery.

I can tell you one thing, I ain't going back on Prednisone. If the GI decides I need to increase the dose out the colon comes. Now that I'm on a low dose and reflect on the past months and realize how screwed up I was when on 60mg of Pred. It's not so much the physical side effects but the mood swings, depression really hit me hard.

I likely will not going on 6mp. If the GI says tomorrow Remicade alone won't cut it then I'm booking my surgery.

Anyway, good luck with the surgery, if anything, you want to be healthy for the baby and for a long time !
Diagnosed U.Proctitis 07

Flare Feb 09 - Diagnosed with Severe Pancolitis
Remicade, 50mg Prednisone, Cortenema PM, 1g 5 ASA suppository AM


ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 8/5/2009 10:24 AM (GMT -6)   
wow, ya you are about in the same boat as me...i am now asking myself why i would want this surg? would it be a better quality of life, or could i pretty much forget about my digestion and move on with life pretty normal? i wonder if there is anyone in tulsa, ok that has had the j-pouch surgery or any Jehovah's Witnesses? i am a witness and i would love to talk so someone who can relate...


24 year old guy, UC since I was 17
remicade for two years, worked great but got married and was told it could cause birth defects so I quit feb 08.
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 20 mg pred
 
starting back on remicade to see if i can get some relief next week,
considering j-pouch surgery this year

Post Edited (ruissarr) : 8/5/2009 10:18:11 AM (GMT-6)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/5/2009 10:28 AM (GMT -6)   
There are folks in OK who have had the surgery. Go to www.j-pouch.org and ask the question in the General Discussion thread.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 8/6/2009 8:48 AM (GMT -6)   
jratt, i decided i am going to have this surgery, hopefully this year, i talk to my gi on monday, aug10.. keep in touch if you decide to get the surg also, i would be interested to see what happens..
24 year old guy, UC since I was 17
remicade for two years, worked great but got married and was told it could cause birth defects so I quit feb 08.
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 20 mg pred
 
starting back on remicade to see if i can get some relief next week,
considering j-pouch surgery this year


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 8/6/2009 10:01 AM (GMT -6)   
What a great thread, very encouraging to read. Being the best parent we can be is the goal for many of us. At the moment, for me, that means not leaving the house with both girls, lest we be trapped in a public bathroom all together--it has happened more times than I care to talk about!
Ruissar, I have found with a newborn you lose a lot of sleep and I think that has exacerbated flares for me with both of my babies. You are very smart to be thinking ahead. Good luck.
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 8/7/2009 8:32 AM (GMT -6)   
thanks amy! its nice to finally have decided..its torture wondering which is the best option..now i am just excited!


24 year old guy, UC since I was 17
remicade for two years, worked OK but got married and was told it could cause birth defects so I quit feb 08. my wife reminded me that i still had D most of the time while on remicade.
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 20 mg pred
 
starting back on at least one remicade IV to see if i can get some relief next week,
most likely having j-pouch surgery this year, within a couple months, so i can be healthy for my baby, meet with my dr about it august 10!

Post Edited (ruissarr) : 8/7/2009 1:31:08 PM (GMT-6)

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